What is the best dosage of Xarelto for Lividoid Vasculopathy?

Posted by zenk @zenk, Oct 5 4:32pm

I take 15 mg. of Xarelto (blood thinner) per day. I wonder if 15 mg. is too low to control active open ulcers on my ankles . Any opinions are welcome. Thanks, Zenk

i'm tagging @ruthnz @curtismiller @gtalan @patientrea @linde and @spence to make sure they see this discussion.

@zenk, can you help me understand? You are thinking that you need a higher dosage of Xarelto to help open ulcers heal. A study published in the National Library of Medicine (https://pubmed.ncbi.nlm.nih.gov/22832942/) concluded that Xarelto comes with a “higher wound complication rate.” Wouldn't a higher dosage worsen the bleeding near the ulcers?

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I was changed to Xarelto and it gave me a fresh batch of ulcers. so I stopped it immediately and went back onto 300mg aspirin. My LV ulcers from Jan 2019 finally cleared in April 2020 and I had 3 carefree months without issue until July 15 when I woke covered in spots from end of toe to top of leg. this was biopsied as Leukocytoclastic Vasculitis. LCV. Slowly the spots faded but some on my feet turned into ulcers just the same as LV. They are being treated the same wasy. Every three days i soak my feet in Potassium permangenate for 30 minutes, debride what I can myself, apply emla and a cover. Go to the Hospital outClinic where the District Nurses debride the ulcers and dress. For two months iodosorb was applied and no we are using Acti-coat Flex 3. Clean and change every 3 days. I can see the light at the end of this LCV tunnel. Ruth.
Forgot to add that on July 15 aspirin was stopped and I changed to Colchicine. AND now I have kidney probs, probably from all the aspirin.
Colchcine google only talks about gout until you add Livedoid or leuko. Ruth

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I am deeply obliged to zenk who showed me the way to blood thinners.Xarelto was the medicine that helped me so much.Te usual dose was 15 mg per day,but in bad days when the ulcers persisted I took 20. One year before things were really bad despite taking the blood thinner,with large ulcers.Some of them had infection.Culture of the pus idetified the offending microorganism,but the choice of the necessary antibiotic was rather difficult,because of allergies.An infectious disease doctor,friend of ours,gave the solution.

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@ruthnz

I was changed to Xarelto and it gave me a fresh batch of ulcers. so I stopped it immediately and went back onto 300mg aspirin. My LV ulcers from Jan 2019 finally cleared in April 2020 and I had 3 carefree months without issue until July 15 when I woke covered in spots from end of toe to top of leg. this was biopsied as Leukocytoclastic Vasculitis. LCV. Slowly the spots faded but some on my feet turned into ulcers just the same as LV. They are being treated the same wasy. Every three days i soak my feet in Potassium permangenate for 30 minutes, debride what I can myself, apply emla and a cover. Go to the Hospital outClinic where the District Nurses debride the ulcers and dress. For two months iodosorb was applied and no we are using Acti-coat Flex 3. Clean and change every 3 days. I can see the light at the end of this LCV tunnel. Ruth.
Forgot to add that on July 15 aspirin was stopped and I changed to Colchicine. AND now I have kidney probs, probably from all the aspirin.
Colchcine google only talks about gout until you add Livedoid or leuko. Ruth

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Hi @ruthnz,thanks for your post.I hope things will be better and the light at the end of this tunnel is very close .What is the dose of colchicine?

Liked by lucky1038

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@zenk one more time many thanks for the invaluable help you gave to me with Xarelto.Sometimes things were bad for me,despite blood thinner use.Five months before I had to decide about robotic total knee replacement.I could only walk just a few meters and I could not take NSAIDS because of Xarelto.Somedays I used to stop the blood thinner and start these antiinflammatory drugs just for 2 to 3 days.The orthopaedic surgeon and the anesthesiologist said they knew nothing about LV.They read about it and finally they decided to proceed.I stopped xarelto and started low dose heparin.I took it for one month without any LV appearance.Knee replacement was successful.With this post I would like to inform all LV people about my experience.You can talk about it with your doctor.

Liked by lucky1038

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Dear Patientrea, So glad to hear knee was a success. I can only imagine the pain you experienced before the surgery and ,as with my surgeries , dealing with the Xarelto issue and the doctors involved being not knowledgeable about Lividoid . Glad to hear Heparin got you through the post surgery . Are you taking any Blood thinner now?
I have been on Xarelto since 2015 15 mg daily. I do not believe it is working as well as I would like it to. My doctors do not know if it is optimal either. I have had two skin graphs placed on my right ankle and achiles tendon area , as the tendon was exposed. I can't describe how bad the pain was.. Right now I have another foot ulcer on my inside ankle bone. which was covered with a cadaver graft . I hope I won't need a skin graft but I am not optimistic because the pain is very bad even with oxycodone. I see the surgeon on wed. to assess it. Let me know what all you take and if it helps when you get a chance. You r input means alot to me
Zenk

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@zenk

Dear Patientrea, So glad to hear knee was a success. I can only imagine the pain you experienced before the surgery and ,as with my surgeries , dealing with the Xarelto issue and the doctors involved being not knowledgeable about Lividoid . Glad to hear Heparin got you through the post surgery . Are you taking any Blood thinner now?
I have been on Xarelto since 2015 15 mg daily. I do not believe it is working as well as I would like it to. My doctors do not know if it is optimal either. I have had two skin graphs placed on my right ankle and achiles tendon area , as the tendon was exposed. I can't describe how bad the pain was.. Right now I have another foot ulcer on my inside ankle bone. which was covered with a cadaver graft . I hope I won't need a skin graft but I am not optimistic because the pain is very bad even with oxycodone. I see the surgeon on wed. to assess it. Let me know what all you take and if it helps when you get a chance. You r input means alot to me
Zenk

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Dear @zenk,please accept my apologies for the delay of my answer.First of all,what did the surgeon tell you today;For the time being I do not take Xarelto.One thing that has helped me very much is sea water.I live near the sea and i discovered that when the red spots appear,if I go swimming or just putting my feet- under the knees- in the sea water by the beach,most of the times these spots disappeared.Low molecular weight heparin really helped me after knee surgery.Do you think you can discuss its potential use with your doctor;I will be waiting for your reply.Once more: thank you so much!

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@patientrea

Hi @ruthnz,thanks for your post.I hope things will be better and the light at the end of this tunnel is very close .What is the dose of colchicine?

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I'm on Colchicine 500 MICROgram tablet. Before the cellulitis I was taking one monrning and one at night. Hospital Dr's reduced it to one per day. I think it's 0.5mg

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@ruthnz

I'm on Colchicine 500 MICROgram tablet. Before the cellulitis I was taking one monrning and one at night. Hospital Dr's reduced it to one per day. I think it's 0.5mg

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Note – Colchicine robs your body of Calcium which needs Magnesium. Eat greens, basil, thyme, cinnamon, molasses, sardines, garlic, figs, yoghurt and cheese. info from a great book – Drug Muggers by Suzy Cohen. I downloaded it from Amazon. best book I own

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@ruthnz

I'm on Colchicine 500 MICROgram tablet. Before the cellulitis I was taking one monrning and one at night. Hospital Dr's reduced it to one per day. I think it's 0.5mg

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Hi@ruthnz,thanks for your reply.Keep posting!

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@ruthnz

Note – Colchicine robs your body of Calcium which needs Magnesium. Eat greens, basil, thyme, cinnamon, molasses, sardines, garlic, figs, yoghurt and cheese. info from a great book – Drug Muggers by Suzy Cohen. I downloaded it from Amazon. best book I own

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Thanks for the information!

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@ruthnz

Note – Colchicine robs your body of Calcium which needs Magnesium. Eat greens, basil, thyme, cinnamon, molasses, sardines, garlic, figs, yoghurt and cheese. info from a great book – Drug Muggers by Suzy Cohen. I downloaded it from Amazon. best book I own

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One question please:Do these foods act against LV?

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@patientrea

One question please:Do these foods act against LV?

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those foods are good for you if you're taking Colchicine. From this book Drug Muggers. When you download the amazon kindle edition the search feature is far better than the index at the back of the book. – https://www.amazon.com/Drug-Muggers-Medications-Essential-Nutrients-ebook/dp/B004MYG4E6/ref=sr_1_1?crid=CYV4RSVILFLD&keywords=drug+muggers+by+suzy+cohen&qid=1602931411&sprefix=drug+muggers%2Caps%2C351&sr=8-1

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How do you treat your ulcers? What products do you use?

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